One of the things we've noticed IML'ers talking about from time to time is the topic of living with an illness or medical condition. Life is hard enough when you're a tween, but when you also have to deal with medication, missing school, procedures, doctors, hospitals, and general feeling-crumminess...UGH! Whether it's something like allergies or asthma, to more serious stuff like diabetes and inflammatory bowel disease, to situations that require surgery or actually threaten one's life, illness can really change things for a young person and everyone around them.Maybe you know someone -- a friend, a neighbor, a classmate -- who has some kind of ongoing medical issue and would like to understand what they're going through, but are afraid to ask questions. We were curious too, so we invited one IML'er, Danielle, age 13, to share a bit about her experiences.
IML: How old were you when you first became ill?
Danielle: I was born with congenital heart defects, which means the defects in my heart have been there since before I was even born. I was also born with a rare condition called Heterotaxy Syndrome. The chances of getting it are four in a million! Because of Heterotaxy Syndrome, I don't have a spleen, so I get sick easily.
IML: What was the scariest thing about your treatment? How have you learned to deal with the various procedures and other headaches that are part of it?
Danielle: I think the scariest thing about treatments is how much it will hurt or how long it will take to recover, or if I'm going to be in the hospital. I guess the best way to deal with the treatments, shots, blood draws, doctors appointments and other stuff is to just be brave about them, and they'll be over soon.
IML: Have you ever had to stay in the hospital for a long time?
Danielle: I have had to stay in the hospital quite a bit before. When you're in the hospital time moves a lot slower. And there is only so much TV you can watch before you're bored. So I normally colored (when I was younger) or I was usually at a children's hospital so I would go to the playroom and do arts and crafts and play with the toys in there. But luckily I haven't been in the hospital in almost three years!
IML: Do you take medication?
Danielle: I do take medication, twice a day. The most challenging part about it is just trying to remember to take it! When I don't take it, it could mean more blood draws (more than just the regular once a month) or another stay in the hospital (if I miss too much).
IML: Is there anything you have to miss out on because of your illness?
Danielle: Because of my medication (and pacemaker) I can't play sports, ride a bike, or even play a game of frisbee. I love vegetables, but I can only eat green veggies three times a week because it will mess with my medicine.
IML: What about friends -- have you had trouble making and keeping close friends? How do they handle your illness and treatments?
Danielle: I don't have trouble making friends or keeping them close, but I don't really talk about it with them.
IML: Do you feel like you've been able to have a normal life despite living with illness?
Danielle: For the most part, yes, I do feel like I have a normal life. I can't go out and play soccer with my friends or I haven't been able to go to camp with them, but I have slumber parties on the weekends. I'm in my school's yearbook class, I do Builder's Club and all sorts of other things.
What about you? Do you have a similar experience to share on our new Living With An Illness You Said It page? You can also talk about how you can help When A Friend Is Ill.
